Lyme advocates say Canada offers “toxic tokenism” to patients
The Canadian government recently announced new investment in Lyme disease research. However, Canadian Lyme advocates fear that the patient voice will be excluded from the decision-making process. In the following article, the Canadian Lyme Consortium (CLC)–made up of advocates, patients, researchers and practitioners–offers background and context.
By Vett Lloyd, PhD; Liz Zubek, MD, CCFP FCFP; Sue Faber and Jennifer Kravis, co-founders, LymeHope; Janet Sperling, CanLyme; Linda Kelso, Ontario Lyme Alliance.
The Canadian Federal Government announced the first major financial investment into Lyme disease research on October 15, 2018 – 4 million dollars designated to support the formation of a Lyme disease research network. Yet the patient community in Canada is not celebrating. Why not?
The answer is that there are a number of very significant problems with how this money is being used to try to control Lyme disease research. The continued exclusion of the Lyme disease patient community from playing more than a token role is the key issue.